Thursday, 20 May 2010

VM: In an interesting study published in Qualitative Health Research you used a phenomenological approach to understand the experiences of self, other, and the world in patients who had recently suffered a stroke and were experiencing hemispatial neglect. Could you say a bit more about the study, and expand on the idea that the findings show the importance of meaning and meaningmaking in the process of rehabilitation?

DZ: That study was investigating first person accounts of neglect soon after a stroke. These were the results from open-ended interviews of 12 participants. Stroke is closely related long-term disability and mortality. And many stroke patients experience hemispatial neglect. What happens is that people no longer notice the left side of their body and the perceptual field. Half of the universe looses meaning and no longer exists for them.

But the interesting part is that even when those parts are now outside of conscious reach, they still make an impact on the experience of self, of others and of the patient's world. And this not only impacts the persons' experiences but also those of their families’ and carers. So when interviewing the patients, we used the guide of phenomenological accounts of embodied subjectivity to explore the impairments that affected the patients’experiences.

From the findings we gathered that the patient experience several difficulties that challenge their life experience. For example, people struggle to remember events, to incorporate new knowledge. The person notices the difference between her abilities prior to the stroke and after it. These are very strange experiences and the patients were mostly reluctant to communicate their bodily sensations.

Many of the problems that we found such as failure to recognize the left side of the body and space or strange bodily perceptions were already present in the neglect literature.

But we analyzed the data from a perspective that took into account the impact of changes and loss in interpersonal relations and spatial freedom (all concepts present in Husserl and Merleau-Ponty’ phenomenology) in the embodied experience of neglect. This enhanced the picture that we previously had and supplemented the existing literature for understanding the patients’ subjective experiences.

It is not easy for people to say that they cannot find their hand. People are mostly concerned with being targeted as drunk, delusional, etc. And this not wanting to share unusual bodily sensations creates feelings of alienation from others and loneness. This of course potentially results into the person loosing ability to maintain close interpersonal relationships. So what do we mean when we say that the findings from the phenomenological approach emphasize the importance of meaning and meaningmaking in the entire process of rehabilitation?

We noticed that the patients’ ability to attend to the left hemispace was enhanced with reminders that the patient found of some sort of significance. There is the example of a mother with neglect who could hold her baby with the left arm but forgot to attend to other things which were less important and meaningful to her. Some patients responded better to challenges to explore the left when prompts were coming from close friends and family which shows the importance of emotional stimuli. And that is why we propose that people who are experiencing neglect as well as their relatives and close friends need to be able to become more familiar with the manifestations of the experience. And this is possible by understanding patient’s interests, particular life history together with clinical observation.